A Pilot Randomized Control Trial of Teens Taking Charge: A Web-based Self-management Program for Adolescents with Cancer

Abstract

Background: There is a lack of self-management tools for adolescents with cancer (AWC). This study evaluated the feasibility of Teens Taking Charge Cancer, a web-based self-management program. Methods: A pilot randomized control trial (RCT) was conducted across 4 pediatric oncology clinics. AWC (12–18 years) and their caregivers were randomized to either the intervention or control group. All were asked to complete 12 website modules over 12 weeks (at their own pace) and received monthly calls from health coaches. The intervention website was based on cognitive behavioral principals, designed as an interactive self-guided online program, while the control consisted of education and included links to 12 general cancer websites. Outcome assessments occurred at enrollment and 12 weeks post-intervention. The primary outcomes included rate of accrual and retention, adherence to the protocol, acceptability and satisfaction with intervention using questionnaire and semi-structured interviews, adverse events and engagement with the intervention. Results: Eighty-one teen-caregiver dyads were enrolled with a retention rate of 33%. In the intervention group 46% ( n = 18) logged in at least once over the 12-week period. A mean of 2.4 of 12 modules ( SD 3.0) were completed; and no one completed the program. Thirty-three percent of caregivers in the intervention logged into the website at least once and none completed the full program. Discussion: The results from this pilot study suggest that the current design of the Teens Taking Charge Cancer RCT lacks feasiblity. Future web-based interventions for this group should include additional features to promote uptake and engagement with the program.

Characterizing User Engagement With a Digital Intervention for Pain Self-management Among Youth With Sickle Cell Disease and Their Caregivers: Subanalysis of a Randomized Controlled Trial

“…Similarly, caregiver engagement was also higher (100% vs 93% completed at least one module) than youth engagement in the SCD population [ 27 ]. In contrast, the Teens Taking Charge Cancer web-based self-management program [ 44 ] reported lower caregiver engagement compared with youth (8% vs 28% completed at least one module), which is consistent with our results. One study on the psychology of eHealth use among caregivers with children having complex health conditions found that factors, such as poor caregiver psychosocial health, high eHealth literacy, and high acceptability of eHealth, were associated with increased engagement [ 45 ].…”

“…Many interventions designed for youth do not have a caregiver component. However, 3 recent digital health studies have reported parent engagement in pediatric SCD, chronic pain, and cancer populations, respectively [ 43 , 44 ]. The WebMAP program was designed for pediatric chronic pain patients and adapted for the SCD population.…”